God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.

Friday, January 30, 2009

When we first got here, I never imagined that we'd still be here as we're going into February... it almost seems like a long dream and I just haven't woken up yet. But, Faith is a lucky little girl, because how many people can say that they have a detailed account of the first 11+ weeks of their life? And she has been responsible for multiple changes to policies in this NICU already...

I changed some things around on the blog today... I'd love to do a cool new template, and google'd for one, but once I find one I like, I have no idea what to do next. Anyone who can help me with that, shoot me an email or call me to talk me through it! I also started a list on the side of the blog, under our picture, of different helpful hints I've learned so far during our NICU stay. If you have anything to add, let me know and I'll add it!

So. Now for elaboration. We have a care conference scheduled for Monday. Hopefully it will help us determine our long-term plan. As of right now, Dr. Hall is on a completely different page than Dr. Partrick.

Dr. Hall seems to agree with us, that a baby who just last week was taking by mouth 80+% of the amount of calories she needs to grow DOESN'T need a g-tube. He seems to be leaning more towards getting Faith up to the biggest amount of oral feeds she can tolerate, and making the rest up with TPN. He assures me (and from what I have found in my research, I believe him) that once she is taking the majority of her calories by mouth, rather than from the TPN, her cholestasis should start getting better. I am VERY glad that we have Dr. Hall on our side with this, I think that give us a big advantage.

If, once she gets down to 20% or whatever it will be of her calories by TPN, the cholestasis doesn't get better, and it seems like she may need to be on the TPN for awhile still, I have already begun looking into Omegaven, and actually yesterday I spoke with Dr. Puder (the doctor in Boston in charge of the trials) on the phone and he said to let him know if we need any help getting it. Hopefully on Monday I will meet the GI doctor who is in charge of it here, Dr. Soden, and Dr. Hall said that he would try and talk to him, as well, to give him a background and find out if Faith qualifies for the Omegaven. I hope that Dr. Soden will see us; from what I can find about him, he deals more with short gut... Faith doesn't have short gut, but hopefully her degree of cholestasis, the probability that she will remain on some degree of TPN for awhile still, and my interest in the Omegaven will be enough to convince him. Jan spoke briefly with him on the phone earlier, but pretty much just long enough to confirm that he won't be able to come to the care conference on Monday, but that he or someone else he sends will try and come see me on Monday.

Dr. Partrick and the surgeons are convinced that Faith can't tolerate enough oral feeds (bolus feeds) to grow. They want to say that it was the volumes that caused her intolerance, when in fact I went back and did the math yesterday, and she was only taking 100 mL/kg of body weight when she started not tolerating her feeds. They want her to be taking about 150 mL/kg. On Thursday and Friday last week, she took 120+ mL/kg, and she tolerated it just fine. The difference on Sunday when she started showing signs of intolerance was that we were feeding her the 22 calorie breastmilk- milk fortified with Pregestimil formula. Then they wanted to use her throwing up as a sign of feeding intolerance, but I called them on it. I asked Dr. Partrick if she was throwing up because of not tolerating feeds, wouldn't she be throwing up pretty much every time we fed her? He seemed slightly defeated when he told me that yes, that would most likely be the case...

Essentially, the root of all of Faith's problems is motility- her intestines just move things through VERY slowly (it took 10+ hours for the barium from the UGI study to make it all the way through for her to poop it out). So the surgeons think that the way around her motility issues is to just avoid feeding her real amounts at one time, and instead put in a g-tube and do continuous feeds. The idea has been tossed around to only do this at night, and allow her to eat normally during the day, but last night when I talked to Dr. Partrick, he seemed to sound like he thought it would/should be all the time.

That is why we said no to them putting a tube down her nose last night. They wanted to do that, and then start continuous feeds. We saw through their plan though, and we know that if we let them do that, it will just give them more fuel to push us in that direction, because they'll be able to say, "Look, it worked, this is what she needed all along." Surgeons have a distinct personality type. Since they can't fix her intestinal issues, they want to do something else to "fix" her. They're very controlling, and they want things done their way. I don't think they're used to anyone telling them "no" or questioning them. They think they're God.

Anyway, I also told Dr. Partrick last night flat-out that unless Dr. Potter and Carlos the resident can be nice, they are no longer welcome to come into our room, and I guess they will just have to talk to neonatology, and have neonatology come talk to me. Dr. Potter has gotten really bad again, honestly he pretty much doesn't come into the room unless Dave is here. I have to wonder if he thinks Dave will control me or something (little does he know...!). Or maybe he just thinks Dave will protect him... Either way, he is condescending and rude to me, and even nurses who have never seen us interact can tell right away, and have commented on it after he has left the room. And don't even get me started on Carlos the resident... there used to be a female resident (I think her name was Janine) who was horrible. She always looked like she had just tasted poop, she was horribly rude to everyone, and just short and snotty and awful. Well, Carlos is as bad or worse than she was. And he isn't just rude to me, he's rude to the nurses too. I told Dr. Partrick that I didn't want to have to go down and talk to the Patient Advocates again, but that if it doesn't get better, I will. I am going to bring it up again in the care conference, just to be sure that everyone involved knows that this has again become an issue. I hope Dr. Sandoval comes back soon...

I realized I haven't really explained much about what a g-tube is. I sort of just assumed people would know, which is a silly assumption, because even I didn't know exactly. Keep in mind that I'm not a medical professional, and I've never seen one in real life, this is just my understanding of what it is. Basically, g-tube is short for "gastrostomy tube". An ostomy is when there is a hole from the outside of the body to a certain body part, and stuff either comes out that hole, or in the case of a g-tube, stuff goes in (although with a g-tube, stuff can go either way). So for a gastrostomy tube, there is a hole in the belly that goes to the stomach, and then it has a little cap-type thing on it at the belly. It makes it so you can feed someone directly into their stomach. Or, if they have a lot of problems with air or delayed gastric emptying, you can vent the air or get the residuals (left overs) out. Like I said, this is just my understanding. I haven't looked that closely into it, because as I said above, we don't really think Faith needs one.

On to more positive things... Faith has made quite a bit of developmental progress over the last week or so. She is moving her arms quite a bit, and bringing her hands to her mouth all by herself. She is also smiling more, although never when the camera is ready. And, she's started to coo. Not very often, but every now and then.

Well. That's that for now... I have a bunch of new pictures, so here they are: (I have more than this, but I accidentally took some that got stored in the memory on Dave's camera, and can't figure out how to get them from the camera to the computer!)

Taking her hearing test (she passed).

Before and after of Broviac removal, short-lived as it was... (it's in the other leg now)

Hangin' out in the bouncy seat

Taking the carseat test

Sick of the hospital (and looking a little orange...)

This and the last one are from Sunday night... right before they found out her direct bili had shot up... her eyes look really yellow in this one.

Showing off the new hat Mommy made her :)

Sleeping after getting her new Broviac

I almost caught a smile this time... she's a sneaky girl and stops when the camera comes out!

Thursday, January 29Well, I stood our ground tonight with Dr. Partrick. I told him Dave and I talked, and we wouldn't consent to the tube, and he said that it is our decision, and if we want to try bolus (normal) feeds again with Reglan to help with motility, that is our choice and he'll support us in that. He brought up the thing I think is their biggest issue with wanting to do the g-tube- that it would get us home faster... it seriously is like they think they can bribe us into letting them do it, just to get us out of here. Dave and I talked about it many times between last night and tonight, and we both think that this is a chance we should take, even if it does mean a few more weeks in the hospital.It is so frustrating, I just want to scream at the surgeons- don't they realize we want to go home a MILLION times more than they want us to go home?? But we're not going to do something invasive without really giving her a chance, knowing for sure that she can't just eat and be fine...So, feeds will re-start in the morning (5 mL every 3 hours to start with), and Reglan started tonight. We're going to work her up to full feeds, as she tolerates it, on bottles, because the surgeons are control freaks and want to know exactly how much she is getting. The docs told us before (when we were supposed to go home) that all she needs to gain is 15 g a day... so we are hoping that she tolerates feeds as well as she did last time, but that this time the Reglan will help keep her tolerating them. Please say lots of prayers that the Reglan will be the answer, and things will really work this time!I will post again when I've had some sleep, and get some new pics posted. :)

Thursday, January 29, 2009

Wednesday, January 28Just a quick post to update. I went with this morning for the Upper GI test, and saw pretty much the same thing we saw last time. The barium goes down, and then pretty much sits in this one dilated section of her small intestine, and doesn't want to keep going. The good news is, her reflux looked MUCH better this time than it did last time. Jan and I were down in radiology with Faith for around 3 hours or so. Then they came up and did additional x-rays. Finally, when they did the x-ray at the 10-hour point, the radiologist called up and said they wouldn't need to do anymore tonight, because the barium had made it all the way through. Faith has had 2 big barium poops since then.Faith's IV came out earlier today, but that wasn't a good thing. Since she is still not eating, she needs to get her IV fluids and nutrition, so for her not to have IV access is pretty bad. Four different nurses tried at least 8 times to get a new one started; every time they'd get one, they'd go to flush it and it would blow. Then Dr. Kamath, the neonatologist, came in and tried to start one, she tried twice and couldn't get it. At that point, the NICU people gave up and called Dr. Potter to let him know. A little while later, he came up with the anesthesia attending doctor. That doc tried 3 times or so before FINALLY getting one started in her foot. After how hard it was to get it going, now she is swaddled up tightly with that foot out, and that foot is taped to a padded armboard, which is then clamped to her bed. This IV needs to last until tomorrow night, especially since there is pretty much nowhere else to poke now with how many times she was poked to get this one.Tomorrow night they will take Faith back to the OR to have a new Broviac put in. They also want to put a feeding tube down her nose, past her stomach, into her duodenum (part of her intestine). I am going to ask to talk to Dr. Partrick (Faith's attending surgeon) tomorrow and ask him why they really think it's necessary to skip her stomach with feeds, because Dr. Potter just said it was because she was throwing up more, and that it would keep her from throwing up. I'm not sure who told them she was throwing up more, and why they didn't mention every time she's thrown up there's been a reason...I think for now I am inclined to refuse to consent for the tube, and tell them that instead we want to try Reglan in combination with regular feeds, since we've never tried that before, and we know now from the UGI that her issues are mainly motility-related. If she fails, then I think we will think about putting a tube down, but it will go to her stomach, not her intestine. Unless she really starts throwing up, I just can't justify not feeding her as normal as possible.Anyway, that is all I know for sure right now, other than that I am about to fall asleep! I have more to post, but it will have to wait until tomorrow.

Tuesday, January 27, 2009

Tuesday, January 27Well, we've been in the NICU for 75 days now. I still have no definitive answers in terms of what exactly is going on, or what they're going to do about it, but I can pretty much guarantee we'll be here at least another couple of weeks. I am beyond disappointed, and I know Dave is, too... but at the same time, I guess I am glad we didn't go home this weekend, because I'm not sure I would've necessarily noticed anything was wrong until Faith was really sick.I noticed towards the end of last week that Faith was looking a lot more yellow, and that she was super tired and didn't really want to wake up to eat. I dismissed the yellow-ness as just the cholestasis, and thought maybe I was just noticing it more than I had been, and dismissed the sleepiness as exhaustion from being woken up every 2-3 hours to eat... but it turns out those things were probably signs of what was coming. I wonder, if they had checked her direct bilirubin (DB) levels at that point, what they would have been. Direct bilirubin is a different kind than the one that causes normal newborn jaundice, so they can't just put her under the lights to fix it. It is caused by the bile backing up into the bloodstream, usually as a result of something like a bile duct blockage (biliary atresia) or a gallstone... As far as we know though, Faith doesn't have either of those. It can also be an indicator of infection, which is why they're doing the full workup on her. None of those results are back yet. They did another ultrasound today, just to be sure there isn't something "easy" like the biliary atresia or a gallstone going on... no results from that yet, but I should know something in the morning. Just to put it into perspective- one source I found said that if the DB level is >3, they should put the baby on a med called Ursodiol to treat it, until it dropped below 2.5. Faith's was 5.something last week, and this week is 11.something. Her eyes are nearly as yellow as her skin...Faith threw up around midnight last night. Not too much, but enough I guess for the surgeons to make her NPO again. I think it's harder this time for her not to be able to eat, because now she really knows what it's like to eat and have some food in her stomach... Her belly measurements were a little bit up last night too, although they're back down now. Sometime in the middle of the night, they put an NG tube down to suction her stomach and keep it empty. I think that might have helped get her belly measurements down, because she had a lot of air in her stomach before. They also did another x-ray at about 2:00 AM to compare to the one from the other day. It wasn't any better...Since she's NPO, she's back on the TPN full force... they are cycling it, but she's getting the full amount. She's also having the fluid they get from the NG tube replaced (just with normal saline). They switched her reflux med back to IV, she had been taking oral Prevacid, but now she's back to IV Protonix, since she can't take any oral meds right now. Which also means she can't take the Ursodiol to help her cholestasis. So that sucks and is worrisome for her liver health.I did not hear from any of the surgeons all day yesterday. I don't know where Dr. Sandoval is, but I haven't seen him since Thursday, and unfortunately it seems like if he isn't here, I don't see a surgeon at all. The good news is, Dr. Hall is back for the neonatology team, so at least there is someone here who can give me some answers (although he has to hear them from the surgeons before he can tell me anything). So he came in last night and talked to Dave and I, and just told us his understanding of what they think might be going on...So, like I said, the increased DB level could be an indicator of infection, or gallstones or biliary atresia. So they drew blood and urine to do cultures and check for infection, and did the second ultrasound to rule out gallstones or biliary atresia. If all of those things come back negative, I'm not sure what the deal is with her liver. I don't think we got a clear answer of where they go next with that if those are all negative.Secondly, the x-rays showed a significantly dilated section of bowel, with a lot of air. The air is actually in the bowel, which is good, because if it's just free in the abdomen, that's a bad thing. But no one is sure why that section of bowel is so swollen. She has always had that one portion pretty swollen, and then the rest of it is quite small, since not as much can get past the swollen section... but it seemed like those irrigations they had been doing really helped, since everything we fed her came out the other end, and she didn't continue to throw it all up. Tomorrow morning they are doing another Upper GI/small bowel follow-through to find out what's going on this time. They offered a few suggested options, saying that if she had a "mechanical" obstruction (where the bowel is actually blocked) they could go in and take that section out, if she had a "functional" obstruction (because of dysmotility and/or the transition from the big dilated section to the smaller stuff) they could possibly taper the sections to fit together better and make the difference less pronounced, or, if they don't really see obstruction or any reason things shouldn't just get through, that she might just not tolerate full feeds in the amount she needs to grow well. They said this means that we might possibly end up going home on a combination of oral feeds and TPN (like 60/40 or 70/30 oral feeds/TPN), or she might end up needing a g-tube put in and having continuous feeds, at least at night. Of these two options, I think I lean more towards the TPN combo, because it seems like a less permanent option than a g-tube... the TPN would require a good, secure central line to be put in, but that seems less scary to me than a tube through her abdominal wall to her stomach... Neither of these options is really anything we want though...Please pray that her ultrasound will come back good, and that the UGI goes well tomorrow, so that maybe we can get some answers and know for sure where we are going from here!

Monday, January 26, 2009

Monday, January 26Well, we're still waiting, and I can pretty much guarantee we won't be going home in the next few days. Last night, the nurse and I thought maybe Faith's belly looked a little swollen. So the surgeons ordered an x-ray, and saw that she has a section of swollen intestine (although she always has...) and that it had quite a bit of air in it. They cut her feeds down to 30 mL every 3 hours, and are giving her IV fluids (D10) to compensate and keep her from getting dehydrated. Then her direct bilirubin (the number that has to do with the cholestasis) was more than doubled this morning, when really it should be going down since she's off the TPN and on the ursodiol medicine, and her liver enzymes were up, too. All together, the signs are pointing to a possible infection.So, this morning they drew a bunch of labs for blood and urine cultures so that hopefully they can find out what's going on. If stuff comes back negative for infection, then they will have to look more closely at her liver and find out what's going on there.They are talking about re-starting TPN, which I am going to fight as much as I can, since her liver is already messed up... unless they can give me a really good reason why she needs it instead of eating. I guess one of the reasons they said for cutting back her feeds was "increased emesis", but I don't know why they said that, because she really hasn't been throwing up. She threw up a couple of times the other night, but I think it had more to do with the particular batch of fortified breastmilk, because she'd had 3 bottles before that and she's had probably 10 since, with no throwing up.Please pray for no infections, and for her liver to heal and work well!!

Saturday, January 24, 2009

Saturday, January 24Well, we aren't going home today. Faith lost weight again last night. It is super frustrating, and the neonatologist who is here today is the first one who has agreed with me that they should have expected her to lose (the dietician expected it too, but none of the other docs said they did). They said she has to have two consecutive days of gaining at least 15 grams before we can go.I know some people will think that if they think she needs to stay, then she should stay, but a lot of their arguments are just them covering themselves in the event that we'd have to come back. They don't think that she will do good enough at home, and that we'd have to come back next week, but Dave and I think that she will do better at home, eat even more, and gain just fine. She is eating more than the minimum amounts that they want her to eat (sometimes she's even eating more than the high end of the amounts they want her to eat!), so common sense says that once her body adjusts to not having the extra fluid of the TPN in addition to eating, then she'll start gaining. We just don't understand why she can't gain at home, instead of here.The other thing that really gets to me is that they are just SO stuck on her weight, when in reality, no one can really know how much she SHOULD weigh. She was swollen when she was born, and she was on continuous IV fluids every day of her life until 2 days ago. With the way she has swelled in the past, I think it's safe to say she probably has issues with water retention, so none of the weights that we've gotten in the past were probably truly accurate. Like, they were accurate with the extra fluid, but not what she REALLY weighs, without the fluid. And I think they are using the weight-for-age growth charts to judge her by, which wouldn't be the way to go anyway, because she's quite a bit smaller than most babies her age. Her newborn sized clothes are still pretty baggy on her. She's not even on the growth charts for length- or weight-for-age, but on the weight-for-length chart she's right around the 50th percentile. And she keeps losing weight... we just weighed her and she weighs less than she did this morning at 7:00, and she just ate 55 mL!I just asked Joanna, our nurse, if there is possibly some other reason why she would continue to lose weight, but she said all of her tests have come back fine. She is going to look at her output records and see if maybe she is still peeing off fluid from the TPN.Anyway, needless to say, we are very frustrated and disappointed that we are being kept here because according to them, she doesn't weigh enough, when really all along, she has probably weighed too much.

Friday, January 23, 2009

Faith lost weight again last night. But she's eating really well, getting the amounts they want her to have. I'm pretty sure they're going to say they don't want to let her go home yet, that she needs to stay here and gain some weight first, so I'm getting ready to argue my case.

For one, until yesterday, she was still on TPN, in addition to eating full feeds. Wednesday, she got an extra 210 mL (over 7 ounces!) of fluid from her TPN, even though she was already at full feeds. Tuesday, it was 400 mL. It seems like common sense to me that she would lose a little when she was getting EXTRA and now isn't. Every time they changed the amount of TPN she got, or the amount of time she got it, she lost a little weight. (On the 15th she weighed 3.67 kg. Then she gained and was in the 3.7 range for a couple of days, then on the 18th they had changed her TPN to 6 hours off, and she lost and went down to 3.66 kg. Last night she was right around there.)

Second, until yesterday, she had fluids going into her every single day of her life. (Even yesterday she was getting 1 mL/hr of Dextrose (D10) just to keep her Broviac from clotting... it clotted anyway though!) No one could possibly say that they know for sure how much she really should weigh, because they don't know that she wasn't retaining fluid from being hooked up to something all the time. Normal adults retain fluid when they get IV's, even when they don't have it continuously going into them for 18 hours a day! AND, they're basing all of her growth on her birth weight of 6 lbs 4 oz, even though I had 2 bags of fluid in labor and she was already swollen when she was born. So that's not accurate.

Third, with the rotavirus scare and RSV all over in the NICU, we're just asking for her to get sick if she stays here. Hospitals are for sick people, and she's not sick, she just needs to grow. She will grow just as well, if not better, at home than she can here. I make enough milk to feed 3 babies, so they won't have to worry that she's not getting enough, and I will have plenty of support and help if I need it from friends at home who are experts in breastfeeding. And the lactation people here love to say that if she's upset or crying when she eats, she's burning a bunch of calories (they use that to justify when the scale says a negative number after she's eaten, even though sometimes she'll be totally calm and eating great and the scale still will say a negative number... the scales suck). So, she is upset a lot when she's here because the nurses have to come in and listen and measure her belly and poke and prod her, and then the docs come in and do all of that, too. So according to their logic, she must be burning a ton of extra calories just by being here and having all of that done. So she should gain really well at home, where no one is doing any of that. That and I'll probably feed her even more at home, because I won't always be weighing her before and after, so I won't know exactly how much she's getting, and I'll err on the side of caution and she'll get more per feeding than she does here.

SO, I am going to tell them that I'm willing to take Faith in three times a week to get weighed, and do before and after feeding weights twice a week, just to be sure she is indeed getting enough. I will even try fortified breastmilk in a bottle a couple of times a day, but I'm going to tell them that I won't try that and sit here to see if she'll tolerate it, because at this point I've seen her NOT tolerate things enough that I'll know if she doesn't.

We gave Faith her first dose of vitamins last night. It's called AquADEKs, and it's supposed to help with the cholestasis I guess. She didn't think it was too cool, and ended up throwing up a TON after having it. So she's not going to have that again. It won't help her if she throws it all up, and we've been trying so hard to NOT have her throw up, so it seems counterproductive. Plus it's this really odd orange color, and I don't want a bunch of clothes/bibs/blankets stained orange (and it seems weird that we want her to stop being yellow, but we'd give her this bright orange vitamin). I had quite the time trying to get it out, until I remembered them saying that they are fat-soluble vitamins, and it made sense then that water wouldn't help get it out. So instead, I tried fat to get it out. I used q-tips and scooped some fat off the top of a bottle of breastmilk, and spread that all over the stain. It worked pretty well, and then I remembered reading on the packet of castile soap that it's derived from coconut oil, which is a fat. So I put some castile soap on it, and it came right out.

Faith took a bath last night, and her hair always gets fuzzy afterwards, so I took a picture because I think it's cute and funny. She has hair like Nathan did, only not as long- it grows mostly down the middle of her head so she has a little mohawk. It's starting to thicken up though, and it's staying pretty dark. Her eyes are changing too, I think they're going to be green.Last night was our last time having Maree as a nurse. She was definitely one of my favorites (and I'm not just saying that because she said she'd read this!). I think it helped our stay so much that we have had such good nurses. We've really only had a few this whole time that I didn't really care for, and then it wasn't necessarily because they did anything wrong, it was usually just because they didn't talk to me enough or tell me what was going on.

Anyway, hopefully the surgeons will come to pull Faith's Broviac soon, since it's clotted, and I will get to argue my case... I'm going to have one of the neonatologists come in, too, so that I don't have to say the same things twice. I hope it goes well!

Thursday, January 22, 2009

Thursday, January 22Faith didn't eat that well last night, and she lost a little bit of weight... they said today that if she didn't eat better/more, they will have to turn the TPN back on. So I have made sure that every time she eats today she's gotten a lot of milk, and I have been waking her up to eat. Dr. Parker said that as long as she is eating well and not continuing to lose weight, they will still let her go home on Saturday, and that he is more comfortable sending her home, even though she might be "borderline", because of the fact that I have been here all the time and know what I'm talking about. Dr. Sandoval was by this morning to threaten her with TPN if she isn't a good girl who drinks her milk... Anyway, that's about it for today so far... I think today's the last time we'll have Mary Ann for a nurse, and tonight we should have Maree, and it might be our last time with her, too. Things are falling into place for us to go home, the docs called Faith's prescriptions in to the pharmacy at home, and Dave is going to pick them up on his lunch tomorrow, since the pharmacy is near his work. He is coming down tomorrow night and bringing the carseat, so we will be able to have Faith do the carseat test, and then we will do our learning about CPR, carseats, and infant choking. The carseat came in a huge box, so we'll be able to pack a lot of stuff in it, and one of the people who refills the supplies for the nurses is going to save me some boxes tomorrow so I can start packing. It doesn't seem like we have that much here, but I know once I start packing it will be a lot. Hopefully we will be able to pack the car well enough that it will all fit!I have to go wake Faith up to eat now, but I will post more tonight if anything happens! (And I'll try to post some pictures, too!)

Wednesday, January 22This morning I rushed through my shower, because I saw the neonatology team on rounds one hall down from us while I was on my way there, and I wanted to make sure I was in the room when they came by. I got back to the room just as they got there to talk about the baby next door, and then it was time for them to talk about Faith. They said they were excited to talk about her, because she is doing so well. They said that she would be coming off the TPN today, and that one of the GI docs was supposed to come by, because we will be following up with them for Faith's cholestasis. Then they asked if we have a pediatrician at home, so I gave them Dr. Albritton's number, and they are going to call her and make sure she's comfortable taking Faith as a patient. I hope she is, because I already called this morning and scheduled her an appointment! Last night they drew a bunch of labs, which required doing a vein stick (in her head, because she wouldn't bleed from her arm) and temporarily putting in a catheter to get a urine sample. Faith's Broviac line isn't drawing for blood anymore, for some reason, even though it flushes fine, so that's why they had to poke her. Then today she had an abdominal ultrasound. The GI docs just want to rule out anything else potentially causing the cholestasis, and have a baseline to go by for when they see her down the road.Yesterday was the last time that we'll have Jan as a nurse. She's on vacation now and won't be back until after we go home, so I made sure to get a picture of her with Faith to put in Faith's scrapbook. (I promised her I wouldn't post it on the blog though!) I am going to try to get pictures of Faith with each of her primary nurses before we leave to go home, I think that will make a really nice page in her book.So, I asked the neonatology team this morning when they thought we could go home. They said probably Monday. Whatever day we go home will be a great day for us, but Monday actually isn't a good day for us to leave, because Dave is going to be enlisting in the National Guard on Monday, so I told Dr. Sandoval that when he came by this afternoon, and asked if we couldn't go home this weekend instead. He said Saturday would be good for the surgeons, and I said Saturday would be great for us, so then he went and talked to neonatology, and they agreed! So, unless anything unexpected happens, we will be going home on Saturday!Dave is coming down Friday night and we will make sure that everything that needs to be done for us to leave gets done, so we can get out of here as early as possible on Saturday. Faith will have to spend an hour in her carseat, we will have to watch some videos on stuff like infant CPR, and we'll have to learn about her meds, since we'll be giving them at home. She is on Lansoprazole (Prevacid) and Ursodiol, which is supposed to help the cholestasis. And she will be on a fat-soluble ADEK vitamin supplement, also for the cholestasis.I can't believe after all of this, we are finally going to go home!! Tomorrow will be 10 weeks, so when we go home it will be day 72... we'll definitely have a story to tell for awhile!

Monday, January 19, 2009

Monday, January 19So, there's been a Rotavirus outbreak in the NICU. Over the weekend they put everyone on our side of the NICU in "isolation", so the nurses and any staff that came in rooms had to gown up and wear gloves, because they got a baby in that had it. Now they've had 2 or 3 more babies catch it, so they're making parents wear gowns and gloves too, and they're closing all of the family common areas except the showers.This is a nasty thing, Nathan and my mom had it when he was about three months old... please say prayers that we don't catch it- we don't need anything to slow us down right now!! I have asked about the vaccine, since Faith is in the age group to be able to get that... There are people from Infectious Diseases here patrolling the unit to make sure everyone is following rules to keep it from spreading more, and one of the doctors is going to find out from them if it is ok to vaccinate the babies here who are old enough, to keep them from getting it. The problem is that it is a live virus vaccine, so there's a chance that I could get contaminated I guess and pass it on to other people... I'm not really into unnecessary shots, but I think with Faith's condition and the struggles she's already had, the benefits outweigh the risks on this one.Thank you to everyone who is already praying for us!! Please pray that we will get to go home soon, and that we don't get this nasty bug!

Sunday, January 18, 2009

Today after church we went up to talk to Pastor Ed and let him know that it was hopefully our last Sunday at Calvary! It is really exciting to think that we really might be going home soon.

We got some shoes the other day to go with Faith's "going home" dress, so now she has the complete outfit and she's all set to get out of here! Seems like she knows it too, because she's finally figuring out this eating thing! Her feeds are at 42 mL/3 hours now, but she's actually ahead for this shift. Her first feed this morning, she took 66 mL (according to before and after weights on the scale). Then we went to church, and the nurse tried to get her to take some formula for her next feed... she only took 15 mL. She's really not into the formula. Then her next feed she took over 50 mL, and she wanted to eat again about 2 hours later and took another 38 mL! And this shift doesn't end until 7:00 PM, so she probably will eat another time before then, and she'll be ahead by an entire feed! She's not "supposed" to be at full feeds until Tuesday night, but at this rate, she's pretty much already there!

And she's gotten a lot better at nursing. The other night I had to nurse her for 30 minutes to get her to take 32 mL (my milk let down FIVE times in that 30 minutes!). At her last feed, she only nursed for 10 minutes and took 38 mL. The downside is that she's using the nipple shield pretty much every time, but I can't be too upset by that, because at least she's nursing! And I know once we're home we can get lots of help and we'll be able to get rid of the nipple shield eventually. I hope that my supply will regulate soon, and then maybe the milk won't come so fast and she won't feel like she needs it. Right now, I'm still pumping some of the time after she eats, just because it feels like there's still a lot of milk left, and I can get 4+ ounces AFTER feeding her.

Beckie, one of our new friends from Calvary Chapel, came to visit the other day and brought over some cloth diapers. They are Faith's first diapers of her own; the few she has at home are pretty boy-ish, left over from Noah. I think they're a little big though... just for fun we tried on one of the "small" covers and took a picture- she'll definitely be growing into these!

My mom made Faith some new bibs. They are perfect for keeping her clothes spit-up free! They are like those towel bibs, with the t-shirt kind of neck, except they're made from cute flannel and the necks are made more like a turtle neck shirt, so the spit-up can't get inside the neck like it does on some of her other bibs.

I saved the blog (at that point) as a Word document the other day... it was about 180 pages! A couple of people have said that I should turn it into a book... we'll see what God has for us in that area. I am thankful for this experience, as hard as it's been, because it has really been a learning experience. Four or five months ago, I would never have guessed I'd ever know as much about NICU life and all of these medical conditions as I do now...

All of this new knowledge has also led me to think of a way for me to help other parents going through similar situations. I had posted awhile back that I was thinking of going back to school to be a NICU nurse. I'm not as sure about that anymore, mainly because it is a lot of school, and the hours would suck... but I'm thinking that there should be a new kind of doula, a NICU doula, that could possibly be a specialty of a postpartum doula. Her job would be to serve as a support and an advocate for the parents of a child in the NICU, to do research on the baby's condition and learn everything she could about it so that she could educate the parents to make informed decisions, and to spend time with the baby if the parents weren't able to. I've learned over the past 9+ weeks that a lot of the things they do in the NICU are just like things they do in labor & delivery- they do them just because they always have, they're routine, but not actually necessarily needed. So, just like a birth doula can help get around the routine and stick to the necessary in terms of birth, the NICU doula would do the same for parents with sick babies. I have no idea how to go about getting something like that going though... hopefully I'll be able to figure it out, because it seems like it would be something very helpful to other parents.

Saturday, January 17, 2009

Saturday, January 17Things are still going well! Faith threw up this morning... after they made her drink formula (Alimentum) from a bottle. She's not big on bottles, and apparently she thinks the formula sucks, too. Joanna (our nurse) called the dietician and left a message, since they're not here today, to ask if we can possibly mix the formula with breast milk and see if she takes it better. Otherwise she'll never get the 2 bottles a day they want her to have... (but I'm still not entirely convinced it's 100% necessary, so I wouldn't care if she didn't have it)At 9:00 tonight, Faith's feeds go up to 39 mL every 3 hours. I've sort of just been feeding her whenever she wants to eat though... it's working and she's not throwing up, so I don't think anyone cares.Noah's down this weekend, he and Dave have been here since Thursday night. We've been staying in the hospital's sleep rooms at night, since he's not allowed to spend the night in Faith's room. It has worked out well, and he's been really very good all weekend. We realized on Friday that he didn't even have any toys here... he had the rug to drive cars on, but no cars, and otherwise just some coloring stuff and movies. So, since we had to go to Walmart anyway, we made sure to get him some cars while we were there. He tries so hard to be helpful with Faith, and it's really cute. When she cries, he says, "It's ok, baby Faith. Don't cry, baby Faith." And he finds her stuffed animals and pacifiers and brings them to whoever is holding her, and says, "Baby Faith wants this!" and you have to take whatever it is, or he will keep saying it over and over. He even shared one of his new trucks with her.

Thursday, January 15, 2009

Thursday, January 15Feeds are at 24 mL every 3 hours now, and will go up to 27 mL tonight. "Full feeds" is 57 mL every 3 hours, so we are almost halfway there! Tomorrow morning we'll be more than halfway! :) Really at this point, the numbers don't matter much because she's only breastfeeding... I think I will probably start weighing her before and after to get an idea of how much milk she's actually getting, but I've heard that it's not super accurate, so I'm not in a huge rush to do that. I'm still pumping before I feed her, just to get the milk to let down and get past the foremilk, and that way the milk is already flowing when I go to latch her on, which helps to convince her she should eat. She's gotten way better at it though, we still use the nipple shield once in awhile when she gets super frustrated and won't stay latched, and it really helps, but most of the time we don't need it and she eats great. I don't really have a clue how much she's getting, I sort of just count the swallows, and give her like 5 minutes or so of good active nursing, based on the fact that it takes me about 5 minutes to pump the amount she's getting now. And that really isn't super accurate, because I know that babies are better at getting the milk out than pumps are, so she may actually be getting more than her 24 mL's. I'm not too worried though because she is tolerating it well, no throwing up or anything.Our nurse today mentioned to Dr. Parker, the neonatologist, about Faith sleeping through her 3 AM feeding, and whether that was ok... he said he thinks it's probably fine, but he's never worked up to full feeds just breastfeeding before, so he doesn't really know how it will work. I guess we're pretty good at doing things they've never done before... I might try a bottle at some point today just to see what she does, but I hesitate because the last bottle she took, she threw up the entire feed. She's not very good at the bottle, even the fancy-schmancy bottles we got for her- she gulps a ton and I think she just gets way too much air, so it doesn't want to stay down. But, maybe since she's better at nursing now, she'll be better at the bottle... Maybe when Dave gets here tonight I'll have him give her one.So that's about it... her potassium was really low the past couple of days, but they gave her some through her Broviac to get her back up to normal. I guess it had been high in the past, so they lowered the amount she has in her TPN, and never changed it back or something... They tried to tell me at first that it was because of her vomiting, but she hasn't been hardly at all, so I didn't believe that. She actually just threw up one little one yesterday morning, and a little one last night, and then one little one this morning. And she's not throwing up her feeds, which is great, and she's pooping and everything... she's doing everything she's supposed to do, so maybe this time will be it and we really will go home soon!

Tuesday, January 13, 2009

Tuesday, January 13Faith is two months old today. Feeds are going about as well as can be expected... I guess the positive side of that is that she is still eating! She is nursing pretty well, although she is still very tired during the day and has a hard time waking up to eat. She is getting 12 mL every 3 hours now, and that will increase to 15 mL at midnight.

She's still throwing up at least once or twice a day, but I started to notice yesterday that she would throw up for sure when she had her Erythromycin if she hadn't eaten about 10-15 minutes before. Then today she threw up her noon feeding, when she had her medicine about 15-20 minutes before she started eating... So I started to think that maybe the Erythro was doing more harm than good and mentioned that to Sarah, our nurse today, so she told Dr. Potter our theory and Dr. Potter discontinued the Erythromycin. So, we will see if that helps her throw up less.We had Sarah for the first time in 7 weeks or so today. It is sort of strange, the longer we are here, the more we are having nurses we haven't had since the beginning. It's kind of nice though, because we had wanted a lot of these nurses for our primary team, and now we finally get to have them.Faith seems to be feeling much better lately. Her heartrate hasn't gone into the 200's in a few days, even when she's mad. It has been staying down around 130-140 when she's awake, and in the 120's or sometimes even lower when she's asleep.I took pictures earlier of the spots where Faith's chest tubes were; I realized I never had before. Her surgery incision is healing, but starting to get a little irritated from her diaper and the waist of her pants, so we have some gauze over it now to keep it protected. She has some sores on her butt from the enemas too, but they gave us some really good barrier cream to use on it that seems to help a lot. They're only doing the enemas once a day now, at 11:00 PM since that is the one she tolerated the best, and they're only using 30 mL of the medicine now instead of 60.She is already sleeping through the night! I don't know if it will stay the same when we get home, but I hope so! She usually has quite a long stretch of calm awake time starting around 6:00 or 6:30 at night, dozing off and on, but for the most part awake and happy, until we do her enema at 11:00 and then get her in her pajamas, do her midnight feed, and then she's down for the night and doesn't wake up usually until around 8:00 AM! Last night she did wake up around 3:00 and cried once or twice, so I got up to pump and feed her, but by the time I got to the chair to sit and pump, she was already back asleep. Then she was up around 5:30 AM and was pretty mad, so the nurse came in and did her stuff she needed to do, and then Faith went right back to sleep again. And usually after she's up at 8:00 in the morning, she goes back to sleep until around 11:00 AM.

Faith can hold her pacifier in her mouth!

Noah is getting so old, learning so many things. It's hard for us as a family to be separated right now, but we are so thankful that my parents have been able to help us so much. I don't know what we would have done without their help. And I think it's been great for both boys to get to spend so much time together, they are both learning so much from each other. I think it's awesome that my mom is able to spend so much time with them, teaching them so many great new things. We will definitely have to think of something nice to do for them when we get home!Anyway, thank you everyone for keeping us in your thoughts and prayers. Please pray that everything continues to go well, so that we can all be home together soon!

Saturday, January 10, 2009

So, Faith's TPN is being cycled now, to try and help keep the cholestasis under control. So it is on for 20 hours, and off for 4 hours. Her lipids already were off for 4 hours every night, and the time that they are off coincides, so now for 4 hours every night, Faith isn't attached to anything (they take her off the monitor during that time, too)!

Last night she took a bath on the opposite side of the room from her bed... it was kind of strange actually, Dave brought her over to the tub and I almost stopped him to tell him I'd bring it over because she wouldn't reach!

It is so cool to be able to stand in the middle of the room with her, and even cooler for us all to be able to lay on the bed together! It was kind of funny, Dave was asleep, but Faith and I were hanging out on the bed with him, watching the 10:00 news, and then Jay Leno came on, and she completely turned her head to watch!

Dave and I went home during the day today to try and do some more cleaning up around the house, and I decided when we left to come back that it was time to bring Faith's "going home" dress down. You know on that yogurt commercial where the lady hangs her swimsuit on the wall for motivation to lose weight? That's the idea- we hung the dress right near her bed, as motivation for her to get better so she can wear it! I did realize tonight though that I haven't found shoes for her to wear with it yet, so maybe she's just waiting for that! ;-)

Faith nursed tonight really well, with no nipple shield and no need to convince her with milk from the syringe! She got frantic a couple of times, but I was able to get her to latch back on without having to use the nipple shield. I am so excited and happy that she is doing so well with nursing, when it has taken almost 2 months for her to even get to try! I hope that she continues to tolerate the feeds so that she can keep going and getting better!

Please keep praying that everything continues to go well, it is starting to feel like we might actually get to go home sometime soon!

Friday, January 9, 2009

Here are some pics from the past few days. Scroll down past the pics to hear the latest news!

Faith's belly, almost all healed! The place in the middle will be her "belly button".

Aunt Laura came to visit yesterday, and finally got some cuddles with Faith :)

Now, for the news! They re-started Faith's feeds today. Dr. Sandoval came in this morning to tell me they were going to, and I was glad, because it gave me a chance to talk to him (I had wanted to talk to him last night but he wasn't here, so I ended up talking to a resident... I'm not a big fan of talking to residents, it's pretty pointless.) He said they would start with trophic feeds again- 3 ml's every 3 hours. He asked if she still had her tube down, and I said no. Then I said I didn't want them to put a new one down, that I don't understand why they would feed her past her stomach, when it refluxes into her stomach from her intestine anyway. He said it's because of her reflux, that feeding it into her intestine makes it more likely that it will stay down, so I said that a lot of babies have reflux and eat into their stomachs, and in fact Noah most likely had reflux and was only ever breastfed and did just fine. At that point, he knew he wouldn't have an argument good enough to get me to agree with him, and I said that I understood that while the amounts are smaller, it would make sense to use an NG tube to feed her. I said that I thought we should at least try feeding her to her stomach, and if it didn't work, then move the tube to be transpyloric. So, he agreed, and then I said something about the tube irritating her and making her throw up more anyway, and he said that the tube definitely does irritate her. Then he left.

A little while later, the dietician came by and said she'd heard they were re-starting feeds, and that she thinks that once the volumes are up, she thinks Faith will need to be fed half of her feeds with the Pregestimil formula, because it has MCT oil in it that is supposed to help with her cholestasis (the reason her skin is turning yellow- the liver damage from the TPN). I am going to look into that a little more before I agree to the formula though, partly because she will be eating it from a bottle and not through a tube like last time and I would like to avoid that if at all possible (I agreed last time because it made sense to me with a step of digestion being skipped), and partly because in all of the reading I did on reflux, it says to avoid MCT oil in babies with reflux, because it takes longer to digest. So I mentioned the bit about MCT oil and reflux, but otherwise just sort of smiled and nodded for now until I can research and know what I'm talking about before I refuse formula. Then she left.

A little while after that, Lori, one of the lactation nurses (who is actually a certified lactation consultant, an IBCLC, who came highly recommended by a local La Leche Leage leader) came by and said she heard Faith was going to be eating, and that they had agreed to let her take half of her feeds at the breast!! She said that the docs and nurse practitioners hadn't been really in favor of it, saying that it would be too much hassle to be worth it, but that she had said, "Seriously?! This mom is here all the time, she even skimmed her own milk!" And then they realized she was right and we could probably figure out a way to make it work.

So, I pumped for 5 minutes first, and we ended up using a nipple shield to convince her, since she's gotten used to that fake feeling from the pacifiers (which is why I was originally opposed to them, but I thought it was more important to let her get some positive oral stimulation and I knew we could work on whatever issues resulted). She fussed and was frustrated for about 10 mins, and Lori used a syringe and slowly squirted about 1 ml onto the shield so that Faith would realize she'd get something out of latching on this time, and finally, she got tired, settled down, and latched on! She did great, I really hope the frustration/fussing bit goes away after we get some more practice, because once she got down to business, her latch was good and she did a good job. Overall it was a really positive experience for both of us, and hopefully things will go a little easier next time.

So now Faith will be having her 3:30 and 9:30 feeds (4x a day) straight from the source! The 6:30 and 12:30 feeds will be done using a nipple from her special bottles we got her and just squirting the milk from a syringe into the nipple for her to suck out. They won't go to all feeds from the breast at this point, because they are very concerned with keeping track of volumes, and the small amounts are virtually impossible to accurately measure if we use a scale and weigh before and after feeds. (In fact, we did that this time, and it said she gained 70 g... but we know she didn't get 70 ml's because she didn't swallow that many times!)

So far no throw-ups since she ate, just one this morning a little while after her enema, which has pretty much been the norm after they've done them. I had been wondering for a couple of days why they weren't trying to feed her again, because it makes sense to me that if they put water in her butt, and it comes out her mouth, then it should work in reverse, and what they put in her mouth should come out her butt... right? So, I am cautiously optimistic that this time the feeds will work... They also started her on the Erythromycin today; they are giving it to her orally, and so far she's keeping it down, so hopefully it will work! Please everyone keep praying that things go well this time, so we can come home soon!!

Thursday, January 8, 2009

Thursday, January 8Someone mentioned in a comment that Faith is starting to look a little dark... if you think her skin is looking dark, you should see her pee! Yes, Faith is starting to show signs of needing to be off the TPN, but the docs are watching her levels very closely, and unfortunately until she gets to full feeds, it's a necessary evil. The good news is, Dr. Partrick said that any liver damage she might end up with from the many weeks of TPN will most likely reverse as soon as she's off of it.The past few days have been more of the same, waiting for her to be ready to eat. Mentally, she is more than ready... she is so hungry and you can really tell every now and then. Physically, her gut just isn't quite ready yet. But, the water/medicine that they're flushing her with for the enemas has started to come all the way through and out the other end- she's consistently throwing up afterwards, and it's almost all water- so that makes me think that maybe things are cleared up and next time they try to feed her it will work.Dr. Partrick is talking about trying to feed her again in the next couple of days, most likely it will be trophic feeds again (the super small amounts). As soon as she is up to an amount that she could take by bottle or breast, I intend to tell the doctors no more tubes! I figure they've tried tube feedings so many times now, and they've never worked, so what would it hurt to try to feed her like a normal baby for once? Maybe if we stopped treating her like a sick baby, she would get better...Faith is growing up... she holds her head pretty well now, and she will track whoever she is looking at. Tuesday evening she sat on my lap in the recliner, with the Boppy behind her, and was staring at me (she always looks at my hairline, I think because of the contrast) and I kept moving my head out of her range of vision and she was turning her head to follow me. And, I got my first real smiles! Real, on purpose, completely awake smiles! That was pretty nice. :)I went home Tuesday night and spent yesterday working on getting our house together. I have our bedroom completely set up and cleaned up now. I got Faith's clothes put away, got our bed made with our new bedding set, got the bed rail put on my side of the bed so I won't have to worry about Faith falling out, got a sheet put on her crib mattress, and took her pretty bumper pad over to my parents' house to get washed. Dave and I are going home again on Saturday to work on the house some more. I am hoping that if we get the house all put together and ready for her to come home, she'll decide to get well.She has gained 13 ounces over the last 3 days... Last night she weighed 7 lbs, 7 oz. No one is sure right now if that's a good thing or a bad thing. Last night she was looking pretty swollen (more swollen than Dave and I had seen her since she had her chest tubes in), so they gave her some Lasix and she pee'd a lot of it off. She still looks a little puffy to me today, but not as bad... They are going to start cycling her TPN, 20 hours on and 4 hours off, like they do with her lipids, and that should help keep her from swelling too. I'm wondering if maybe she really is just growing. I want her to grow, but I also can't help being worried when it's so much, so fast... it makes me wonder what the docs are missing, especially after it took them a week to realize the chylothorax thing was going on. And I don't want her to grow so much that she won't fit all of the clothes we've gotten for her when she gets home! I have some new pictures to post, but I will do them later tonight probably. I just wanted to get a couple of updates posted (I've had that one from Sunday ready to post since Monday night!). Anyone who reads this who lives near the hospital, you are more than welcome to come and visit any time, especially during the week! Just call or email me to make sure I'll be here (I usually am).

Monday, January 5, 2009

Yep, patience... a virtue I really don't possess. They stopped Faith's feeds again on Sunday morning, after they took another abdominal x-ray and discovered (hopefully) the real reason for her continued vomiting. Dave and I were getting ready to leave to go to Loveland for the day and work on getting things done at our house, so things will be a little more ready when Faith can actually go home. As we were getting the last of our things together, I noticed that Faith's TPN was back at 18 mL/hr, when it had been at 9. I wanted to think it was a mistake, but decided we should wait around until the nurse got back from eating lunch so we could ask her about it. When we did, she told us they had made Faith NPO again, and that as soon as we saw the x-ray, we'd understand why.

So, she took us to her computer and showed us the x-ray (they're all digital now, it's pretty cool), and we could see that 24 hours after the contrast study, Faith still had quite a bit of barium in her stomach (that was actually from her intestine) and in one place in her intestine. There were little spots of barium past that area, but it was pretty obvious from that picture that she has some type of an obstruction going on still.

So, we had to wait all day yesterday to hear from surgery what their plan would be. Then I waited most of the day today, to hear from surgery what their plan would be. I saw them twice this morning, but Dr. Sandoval (and Dr. Karrer) could only tell me that they needed to talk to Dr. Partrick and see what he thought. Finally around 7:00 tonight, Dr. Sandoval came in to tell me about their plan. They are going to start irrigating Faith from the bottom twice a day. They are thinking that her intestines might still be plugged up with stuff that's not moving through like it should, and so they think that if they can flush some of that out, then things will move better. Dr. Sandoval did the first irrigation tonight, but didn't get a whole lot out.

Dr. Partrick came shortly after Dr. Sandoval left and talked to me in a little more detail about the plan. He said that he thinks a lot of Faith's problems stem from the size of most of her intestine. He said the fact that so much of her intestine is very small around, but one section is dilated, makes it harder for things to get through, and that the small part just isn't working as well as it normally would, and since it isn't working that well and things aren't getting to that section as much, it isn't getting stretched out to the size it should actually be. He said that the intestinal issue is probably contributing largely to the vomiting, particularly the projectile vomiting, because it is easier for everything to just come back up, rather than push through that narrow section of bowel.

So, we will wait some more. This is the part of gastroschisis that I didn't want to think would happen to us, this waiting forever for her intestines to work like they should. Then once we're done waiting on that, we will wait for her to show us she can handle eating... I came to the realization this morning that it seems like maybe God is trying to teach us something through all of this, and we're just not getting whatever it is He wants us to learn. It just seems like things start to get better and everyone is optimistic, and then something comes along that no one expects... like God is saying, "Oh, wait, you didn't learn your lesson, you can't be done yet!" I can think of a couple of things I should be learning from this... the patience thing for one, and also to let go of my desire to always be in control and realize the only one who is truly in control is God.

Faith hasn't thrown up much today, only three times, and they weren't very big. No one is sure if it's because she's not eating, or if it's the Prevacid starting to work. Either way, it's nice that she seems more comfortable.

Saturday, January 3, 2009

Faith has thrown up quite a bit over the past few days. She had been doing better, throwing up less, but then they stopped two of her anti-reflux meds. And, since they both got started and stopped around the same time, we don't know which one it was that was working (or if it was both). She is on Zantac, and has been for quite awhile, it is in her TPN. But obviously it doesn't do much for her, because she still has reflux and throws up a lot. So they had put her on Reglan and Protonix, and about a day or two after they started those is when she was throwing up less. But now she's back to just having the Zantac, because for some reason they didn't think she needed more than one reflux med.

We are paying lots of attention to her positioning, making sure she is always at an angle. Her crib is as angled as it can be, and she spends quite a bit of time in her bouncy seat or now in her swing. (The "magic swing" has re-made an appearance, and works great yet again!) When we hold her, we make sure she is almost sitting. She likes to be in a sling in a more upright position. And sometimes we put her to sleep on her tummy, which seems to really help.Once again she has stumped the docs, they want something to be wrong with her that they can go in and "fix", but she doesn't have any reason really for her throwing up, beyond reflux. She most likely has GERD, which is pretty much the worst type of reflux babies can have, and beyond positioning and medications, there isn't much else they can do for it. (There is a surgery, called a Nissen fundoplication, that they can do as a last resort, but it will take A LOT for us to consent to that.)

They did another upper GI/small bowel follow-through study this morning to be sure there isn't anything else going on. With her projectile vomiting they thought it might possibly be a condition called Pyloric Stenosis, where the muscles at the outlet of the stomach are thickened, keeping the contents of the stomach from emptying into the intestine (projectile vomiting is a classic symptom of this condition). This time Dave and I went with for the study. It was interesting... she drank a little of the barium from a bottle, and we could see it go down, all the way to her stomach. Then they put some down the feeding tube into her intestine, and we could see her intestine get outlined as it made its way through. We found out pretty quickly that she definitely doesn't have Pyloric Stenosis, because the barium actually went backwards a little bit from her intestine into her stomach.

Dr. Sandoval came by after the study and said at this point all they can say definitively is that she has reflux, so they will just try to treat that and see what happens. They have re-started feeds, still transpyloric (into her intestine), but now they are just breastmilk. And, on my suggestion/question, they will be putting her on Prevacid, and hopefully/possibly Erythromycin too, to treat the reflux.

There are three main types of reflux meds (besides regular antacids): acid blockers, proton pump inhibitors, and motility agents. Zantac is an acid blocker, Prevacid is a PPI, and Erythromycin is a motility agent. (Actually, Erythromycin is an antibiotic, but it happens to have a side effect of increasing gastric motility, which means it helps the stomach empty faster. The other motility agent they normally use is Reglan, which has a number of bad side effects, so we don't really want them to use that if we can help it.)

They haven't actually started the Erythro yet though, because there is an issue with the dosing. The IV dose is 30 mL every 6 hours, which is quite a lot of volume for a baby as small as Faith. They also have an oral dose, but the problem with that is that Faith is naughty with oral meds, and either gags herself on them, or throws them up as soon as they're down. So hopefully they will figure something out for giving her that med, and hopefully these medicines will help. Once she starts to gain some weight and hopefully with these meds throws up a little less, she will be able to start eating from a bottle, and we will be much closer to going home.

In the meantime, we've gotten pretty good at preventing the frequent changes of clothes and bedding. Faith wears a bib all the time, and we cover as much as we can with burp cloths. It's a good thing the hospital has so many, because we are probably going through at least 20-30 a day. We will definitely need to stock up on some for when we get home!

I altered a few pairs of Faith's pants that go with some of her shirts, so that she can wear them with her Broviac. I had been just feeding the Broviac up and out the waist of the pants, but it has been kinking lately, so I wanted to avoid that problem. So, I had Dave bring my snap press down, and I put snaps up the right leg of the pants, so that the Broviac can come out the side of the pants and not get kinked.

Faith got a Gloworm for Christmas and likes it a lot, and yesterday she got her Christmas gift from Gram (my grandma) and it is a seahorse that is a lot like the Gloworm, but it stays on for five full minutes! It's pretty cool and she likes it. She got lots of cool Christmas presents, and we are very thankful for all of them.We are also incredibly thankful for everyone who has brought meals to the hospital. They were so incredibly helpful, especially after my mom and the boys went home, since now I am here by myself most of the time during the week, and a lot of times I have a hard time remembering to eat. The fact that everyone has been so kind and helpful to us when they don't actually know us is amazing, and you are all truly a blessing to our family.

Total site visits:

Welcome to Faith's Place!

This is Faith's Place. Faith is a gorgeous little girl who had a long recovery from being born with a serious birth defect called gastroschisis (she had a hole in her abdominal wall and her intestines were on the outside at birth). Her intestines suffered some damage, most likely from being exposed to the amniotic fluid before she was born, and didn't work like they should; she was diagnosed with functional short bowel syndrome at about 4 months old.

Faith was born November 13, 2008, and spent her first 127 days in the NICU at Denver Children's Hospital. Because her intestines were not functioning, she was not able to receive nutrition in the normal way through her stomach and intestines, so she was on IV nutrition (TPN and Intralipids) during this time.

As a result of being on TPN for such a long time, she suffered liver damage to the extent that her doctors in Denver believed she should be evaluated and listed for a small bowel transplant. However, with a survival rate of only 50% at 5 years post-transplant, we weren't ready to take that step. Instead, we did considerable research on our own, and found out about an experimental treatment for babies with TPN-associated liver disease (TPNALD) called Omegaven, which was run by Children's Hospital Boston.

On March 24, 2009, Faith was admitted to Children's Hospital Boston, and became Omegaven baby #115. After only 30 days on Omegaven, Faith's direct bilirubin level (an indicator of liver health) had already dropped from 6.7 to 2.0, including an expected spike to 8.0 about 2 weeks after starting Omegaven treatment. Less than 6 months after starting Omegaven, she was fed 100% through her stomach (enterally), getting large amounts periodically during the day (bolus) and continuous feeds over night, and her liver function test results were *perfect*.

Her central line (a permanent IV line in her leg through which she received her TPN) was removed on September 16, 2009, after almost exactly 10 months to the day of having a central line, without ever having a line infection!

She learned to eat and drink by mouth, and by 18 months old, she was 100% orally fed! Her g-tube was removed in December of 2010, making her officially tube-free for the first time in her life. She is now enjoying life as a "normal" preschooler, with very little medical follow-up, and other than her scars, no outward signs of any of her journey to this point.

If you are new to Faith's blog, click on "2008" in the archive list, scroll to the bottom of the page, and work your way up to read her story from the beginning!

Search Faith's Place

Statistics to consider...

-The survival rate of children with direct bilirubin levels greater than 3.0 for 3+ months is only 22%. (Faith's direct bilirubin levels were greater than 3.0 for about 4 months.)-The survival rate of children on TPN for longer than 1 year is only 10%.-The survival rate of children who receive a small bowel transplant at 5 years post-transplant is only 50%.-The survival rate of children, with a history of TPN-associated liver disease and direct bilirubin levels of at least 2.0, on TPN, with Omegaven replacing Intralipids, is 98%!!!!!!

Education is the key to saving the lives of children with TPN-associated liver disease. The sooner these children receive Omegaven, the better their chances are of a "full" recovery (any damage that is done stays done, Omegaven does not reverse scarring in the liver).Healthcare professionals who know about Omegaven and neglect to tell their patients it is an option, in my opinion, are failing to uphold their responsibility to do whatever it takes for their patients' health and well-being.If your child is suffering from TPN-associated liver disease and you have found out about Omegaven and its benefits on your own, and your doctors are giving you the run-around when you bring it up to them, it's time to change doctors!! (believe me, I've been there) Omegaven WORKS, as long as it is not started too late!